Saturday, January 9, 2010

Camila's Initiation

I am heartbroken to tell you that Camila had her first seizure this morning. I was in the other room pumping when I heard Andre' call out "Camila is having a seizure!" Before I knew it we had called 911 and were heading to the Children's Hospital not with Soliz, but with Camila. Like I told Andre' earlier I have done this many times with Soliz, but to see Camila there laying on the hospital bed was just not right. She has seemed worn out most of the day and having a hard time settling in for the night. Today was her initiation into the medical world. Not a day I was looking forward to for her. I knew this day would most likely come as kids with Wolf Hirschhorn Syndrome have a "50-100% chance of having seizures". Soliz had his first one at 5 months old; Camila is 8 1/2 months old. Still it has taken me by surprise. Again I pray to be able to handle all that comes my way.

6 comments:

So sad to hear the news about Camila's initiation into the medical world Heather Joy! Please know that we will send special prayers and good vibes for Camila. Went through the same thing (again - #5) Thursday with Renzo. Hugs to you all, and if there's anything we can do, please don't hesitate to call.

I am so sorry to hear about Camila. I hope this was her first and her last. I don't think I will ever be prepared to handle a seizure. I hate that it is possibly a part of all of our lives. We pray that she recovers quickly and is back to herself again. She looks to strong and beautiful in all of your pictures.

Oh Heath. I am sorry for this trauma, for all of you. And also, thankful that modern medicine can help get Cami through it and to the other side, back at home, to laughing with her bro. I have never had a child with chronic medical conditions, but now I have a 12 year old girl (next week - 12 years since you helped her come into this world!) in constant pain these past weeks. It's her ankles. Not sure what's going on - doctor's visits are scheduled. It is so hard as a mama to see your child in ongoing pain and not be able to take it away. She cried all weekend. So I feel a bit of what you might feel. Just a bit. Love you, friend.

Nooooooo! This post made me so sad. Eventhough siezures are so likely with WHS kids I think we all still hope that it is possible that our kids will be that small percent that don't have to deal with them. Actually, I think we all really hope that NONE of our kids had to deal with them. So sad to hear that Camila had a siezure but hoping they can be easily controlled and that she never has one again.

We feel bad that sweet Camila had a seizure...we know it must have been a tough time for all of you, especially her. Our deepest thoughts and prayers are with you, wish we were there to give each of you a big hug! We will call you tomorrow...much love, Dad and Irene

Welcome to our blog!!

This is the story of our family. Our two babies were born with a rare chromosomal syndrome called Wolf Hirschhorn Syndrome (or 4p-). Born 21 months apart, Soliz is 4 and Camila almost 2 and a half. This blog was created to share with you our hopes and dreams and everyday challenges. Hopefully our family is an inspiration to you. trilliumdoula@yahoo.com